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Seotember 20OB
EosinoBhitic Gastrointestinaf Disorders
by Loretta Jay
qJfack didn't sleep more than
at a time dur^ I ten minutes
ing his first eight months
V
of life. He cried constantly until
he was two and his screams led
his grandmother to refer to him
as the 'baby from hell'. Horrible
eczemacovered his arms, neck
and face; his face oozedpuss.
Michele Friedman. Jack's
mother, was a practicing psychotherapist. A new mother, but
seasonedin life, her gut told her
that there was something terribly wrong - that his screams
were provoked by pain.
Jack's doctors didn't support
this theory, maintaining that he
was simply colicky. Even her
suggestion that Jack's diet could
be the cause was rebuffed. It
wasn't until his secondanaphylactic reaction, at two years of
age, that Jack tested positive for
the top eight food allergens, as
well as apples and melons. Jack
was hurting, and food allergies
were responsible.
An increasing number of people
are experiencing numerous food
allergies: not just nuts and milk
or eggs,but many other foods as
well.
Some of these people have
something called eosinophilic
gastrointestinal disorders (EGID).
Most EGIDs are
triggered by food
and environmental
allergens. When
exposedto an
offending trigger,
symptoms resemble gastroesophagealreflux disease
(GERD) and irritable bowel syndrome (IBS). Other symptoms
include vomiting in children or
food impaction in adults.
Pathologically, white blood
cells called eosinophils develop
in the gastrointestinal tract
indicating a problem. If
eosinophils are present in the
esophagusthe diseaseis called
eosinophilic esophagitis (EE).
Eosinophils in the stomach is
called eosinophilic gastritis
(EG), and if they permeated the
large intestine, eosinophilic colitis (EC). Finally, if eosinophils
affect the stomach and/or the
small intestine it is called
eosinophilic gastroenteritis and
eosinophilic enteritis.
EGIDs are a new disease,
first identified in the 1970s,and
formally recognisedonly 20
years ago. At that time they
were thought to be extremely
rare, only affecting one in
The diagnosis
20,000-100,000.
rate has steadily increased, with
EE now affecting one in 2,500
children and adults. It remains
unclear whether a growing
awareness of the diseaseis affecting the rate of diagnosis, or
ifthere is an actual increase in
the number of people with the
disorder.
S5rmptoms
The varied presentation of
symptoms can make it challenging to identify and categorise
EGIDs. Symptoms affect different people in different ways.
Jack has anaphylactic reactions to peanuts, eggs, shellfish
and garlic. Other foods, including wheat, dairy, chicken and
beef give him stomach aches,
headaches,vomiting, sore
throat, trouble swallowing and
gagging. Like many other people
with EGIDs, Jack also experiencesasthma, eczemaand rhinitis symptoms.
Most children experience
heartburn and regurgitation
and other reflux symptoms that
may not resolve completely with
acid blocking medications (ie
Lansoprazole, Esomeprazole).
Young children who are unable to expresshow they are
feeling may resist eating or refuse food altogether. Nausea,
vomiting and stomach aches are
also common, as is difficulty
swallowing or food getting stuck
in the esophagus.
Dysphagia (difficulty swallowing) and food impaction are
the most common symptoms for
adults with EE.
The Center for Pediatric
Eosinophilic Disorders at the
Children's Hospital of Philadelphia (CHOP) has the largest
number of clinical patients with
EE in the world. Dr Chris
Liacouras, the co-Director at
CHOP's Eosinophilic clinic, said
that physicians are beginning to
see the same symptoms for children and adults. Varied symptoms are now being recognised
in different age groups and
therefore diagnosed more readily across the spectrum.
Diagnosis
A diagnosis of an eosinophilic
disorder requires a physician's
confirmation of the symptoms,
coupled with an analysis of biopsies taken during an endoscopy.
Scoping, as the endoscopyis referred to informally, is performed when a gastroenterologist puts an endoscope
(a thin tube with a video camera
at the end), through the person's
mouth and into the targeted GI
area; the patient is sedated during the procedure. Tissue samples, or biopsies, are taken of
>r)tember 2U0B
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the different parts of the GI
tract. Although a normal esophagus has no eosinophils, the
American Gastroenterological
Association's consensusrecommendation concludedthat 15
eosinophils per high powered
field is the current criterion for
an eosinophilic diagnosis. (Gostroenterology,200 7; I 33: 13421363.)A few eosinophils may be
present with untreated reflux,
so patients are typically placed
on a reflux medication prior to
the scope,to avoid any confusion
with GERD.
Eosinophilic food allergies
may be IgE-mediated,causing
an immediate and sometimes
anaphylactic reaction. They may
also be cell mediated, resulting
in a delayed hypersensitivity.
One study (Assa'adet al, Journal of Allergy and Clinical Immunology,2007; 119: 3,731-738)
found a nearly three-year lag
between the onset of symptoms
and the first endoscopy.The researchersinterpreted this to
mean that it wasn't the severity
of the symptoms that led to the
scoping,but their duration.
Some people are able to figure out what foods trigger a reaction for them, and modify
their diet on their own - without
securing a diagnosis. Dr Liacouras explained that if someone is experiencing EGID, it is
important to obtain an accurate
diagnosis, and not self-manage
by restricting one's diet. For example, he said that about 50%
of those with EG have an autoimmune problem, which
means that their antibodies are
attacking their own body in an
attempt to rid it of the toxin.
Others may have internal tissue
damage due to unknown allergens without any overt symptoms.
If the eosinophilic disorder is
identified early, Dr Liacouras
believes that the likelihood of
Iong-term problems, such as
strictures or morbidity is low.
One quarter of those affected
have intermittent symptoms,
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p 11
EGIDs are chronic, although patients' state may fluctuate:
sometimes they are stable and
other times not. A recurrence is
defined as the reappearanceof
symptoms and eosinophils in a
patient who was previously stable, with a restricted diet under
control and no eosinophilic infiltration apparent in the affected
area of the gastrointestinal
tract. When this occurs, the
cause,or new allergens, must be
identified and eliminated. In a
patient who is unable to resolve
the presentation of symptoms
the diseaseis consideredpersistent.
patch testing is not
reliable, in part
becauseit is not
standardised, so
the results differ
from location to
Iocation. The
testing is
conducted
by
mixing
commercially
available
food
product
(milk,
dried whole egg powder, tomato,
corn. etc) with saline to make a
paste. After mixing, the food
paste is applied to the skin of
the upper back and removed
and scoredbetween 48 to 72
hours.
Treatment
Allergen Brevalence
BecauseEGIDs affect the gastrointestinal system, but are
typically mediated by allergy,
they are dually managed by an
allergist and a gastroenterologist. The general treatment for
EGIDs is removing the offending foods from one's diet.
Frequently the challenge is
figuring out what the offending
foods are.
Skin prick tests are a fairly
common method used to identify
allergens. Many people don't
have an immediate reaction to
an allergen, and don't test positive with skin prick testing
(SPT). Some eosinophilic research centers in the US are
now using atopy patch testing
(APT). APT was initially used in
Europe for patients with
eczema. Spergel et al (Allergy
Asthma Imrnunology 2005;
95:336-343)found that 77o/oof
EE patients improved after six
weeks on a restricted diet when
patch testing was used in conjunction with SPT to determine
what the allergens were. Despite this favourable response,
Dr Liacouras explained that
The children in Assa'ad et al's
2007 study had as many as 62
food allergens and 11 indoor and
outdoor environmental allergens, as identified by SPTs.
With so many potential allergens, trial and error is not a realistic method to figure out the
problematic foods. It is hoped
that in three to five years APT
will be commercially manufactured so that its results will be
consistent and it can be widely
used.
While some people with
EGIDs have many allergens,
others may have only one or
two. If testing is not conclusive,
other methods to identify the alIergens are needed.One such
method is an elimination diet,
where the patient's food intake
is limited to five or six foods.
Very gradually, one food at a
time is introduced. After each
food introduction the patient is
scoped,to check for eosinophils.
Depending on the number of
determined allergens, a patient's diet may be severely restricted and he may have a
difficult time getting a
Continuedouerleaf:
another quarter have long-term
or exasperated symptoms, and
the rest fall somewherein between.
Recurence
p12
www.foodsmatter.com
nutritionally balanced diet, or
enough calories. Amino-acid
based formulas like Neocate or
Elecare may be taken to suPPiement the diet or be used as a
sole source ofnutrition. Since
these formulas are not very
palatable a feeding tube is
sometimes surgically imPlanted
into the stomach and the formula directly ingested.
Dru€ treatment
While currently no medication
completely resolves the symPtoms of EGIDs, some drugs do
help. Antacids and proton pump
inhibitors that treat GERD alleviate some symptoms. Systemic
(prednisone) and topical (inhaled through a metered dose)
corticosteroidshave resolved
acute symptoms of EE, but
when the medication is discontinued the disease'ssigns return. (Goslroenterology,200 n
Jack, now a charming 12 year
old boy, is an articuiate and animated speaker. During the interview for this article he
conveyeda positive outlook toward the bi-monthly endoscopies.Jack is clearly a partner
in the team made up of his
family and physicians. He is
currently on a trial of an intranasal corticosteroid; he'll be
scopedagain to determine if the
medication alleviated his symptoms presumably causedby environmental allergens. After the
Fooos Merrnn
medication's effectivenessis
determined, a food challenge is
planned: apples. Six to eight
weeks eating apples and he'll be
scoped.again.
SuBBort
The emotional toll of EGIDs on
a patient and his or her family
is great. It is tough for someone
to manage one or two food allergies. Challenges increase with
each additional forbidden food.
Creativity in the kitchen is a
must, as is support from friends
and family. Fortunately, today
there are support groups, chat
rooms and a gradual increase in
awareness.
Beth Mays knows how important support and awareness
are. When her son, Charlie, was
diagnosedwith EG his doctor
told her there was nothing credible to be gained from consulting
the Internet. Beth took the challenge and in 2001 she founded
the American Partnership
for Eosinophilic Disorders
(APFED).
Now with 875 members from
more than 10 countries, the organisation provides accurate
information to members, advocates for education and awareness of EGIDs, and raises
money for research. APFED's
website receives 1,500 hits a day
and its 400 pages translate into
14 languages.
APFED successfullysought
legislation to declare the third
week of May National
Eosinophilic Awareness Week in
the USA. The group was the
driving force behind the
currently pending proposal in
the United States to develop
unique ICD-9 codesfor EGIDs.
Dedicated ICD-9 codesallow
physicians to standardise
patient diagnosis. This information greatly enhancesre
searchers ability to classify,
track and report patients
with EGIDs, and consequently
to develop new treatments and
improve awareness.
tel02O77222866
September2008
Research
Disbelief that there was no cure
for the diseasethat was affecting her daughter, Ellyn Kodroff
was driven to establish the
Campaign Urging Research
for Eosinophilic Diseases
(CURED) in 2004. CURED recently raised over $600,000
USD, all earmarked for research. Cincinnati Children's
Hospital Medical Center, a recipient of some of these funds,
will pursue the identification of
eosinophilic markers in the digestive system; their goal is to
support diagnosis via blood
work instead of an endoscopy.
Dr Liacouras said that researcherscontinue to explore
whether those with eosinophilic
disorders are predisposedgenetically, if there is a trigger that
causesthe disorder to kick into
gear or if people are born with
the disease.The disease'sprogression is also being explored,
including tissue changes such as
fibrosis (scar tissue formation).
Medications to treat the effects,
such as anti-Il5, are also on the
horizon. Researchersin Australia have been involved with
clinical research for several
years, and in Italy, Spain and
England they are just starting
to get interested. With growing
interest in EGID, those on the
forefront ofthe diseaseare
optimistic that the research and
increased awareness will yield
positive results.
supBort €trouPs
APII'ED - Support, awareness,
education, research, chat room
www.apfed.org
CI'BI!I'
Research and awareness
www.curedfoundation.org
I'A3IiI)
chat
Support,awareness,
room for families in the UK
www.fabed.co.uk
Loretta Jay is president ofParasol, a US consulting organisation that specialises